Valcyte + Famvir Success with only mildly elevated titers

I was under the impression that these viruses have to entre the general circulation to replicate etc so even if the av's dont cross the blood brain barrier, eventually the av's get them when they try to replicate by going into the general circulation. This helps lower the viral load and also is why people have to be on av's for so long, but im not 100% on this.

cheers!!!

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We need an expert here. Wish we could get one.

There are so many subtle details that are hard for us laypeople to keep up with. I read a lot, but there's very little I'm sure about.

PCR DNA tests can detect HHV-6 in the serum during primary roseola infections and in acute transplant reactivations, but they cannot determine reliably if a patient has a chronic central nervous system (CNS) infection that has reactivated , because there is so little virus circulating outside of the tissues. HHV-6A & B viruses (especially HHV-6A) migrate to the central nervous system and other organs and away from the bloodstream. HHV-6A has been found to persist in the spinal fluid long after it has disappeared from the plasma.

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Furthermore, in many viral infections, large numbers of virions spill into the plasma when the virus is replicating but this is not the case with HHV-6 because it is spread largely cell-to-cell or directly through the cells walls. The net result is that very little of it ends up in the serum so PCR tests must be extremely sensitive to detect persistent HHV-6 infections, once the acute phase is over.

Not sure how testing is done in the US, but exactly because of the insensitivity of the antibody testing or PCR, in Germany many doctors are using the Lymphoccte Transformation Test, which basically is the level your lymphocytes are reacting to certain antigens, ie my antibodies showed that my EBV is not active, but th LTT revealed sky rocket high titers, which means that my lymphocytes are actively fighting the virus. If it was latent, the activity level would be rather low, but mine showed clearly an active fight by my immune system with the EBV virus. Here, they are treating high titers, irrespective of whether it is regarded "latent" or "active", as a high titer means that your immune system is hving a horrible time dealing with the virus and not having capacity for other fights (bacteria, parasites).

Not sure how testing is done in the US, but exactly because of the insensitivity of the antibody testing or PCR, in Germany many doctors are using the Lymphoccte Transformation Test, which basically is the level your lymphocytes are reacting to certain antigens, ie my antibodies showed that my EBV is not active, but th LTT revealed sky rocket high titers, which means that my lymphocytes are actively fighting the virus. If it was latent, the activity level would be rather low, but mine showed clearly an active fight by my immune system with the EBV virus. Here, they are treating high titers, irrespective of whether it is regarded "latent" or "active", as a high titer means that your immune system is hving a horrible time dealing with the virus and not having capacity for other fights (bacteria, parasites).

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That sounds very sensible to me. I am completely mystified why the US medical community is so committed to these insensitive tests. No one has ever even mentioned LTT to me here.

I look around at ME patients who are clearly sick with viruses that look like various herpes viruses but are told their tests don't support the diagnosis and I'm reminded of a line from Terry Pratchett:

I think this is Granny Ogg speaking:
"There's no point in looking at a dog and saying it's not a dog because a dog doesn't look like that."

Not sure how testing is done in the US, but exactly because of the insensitivity of the antibody testing or PCR, in Germany many doctors are using the Lymphoccte Transformation Test, which basically is the level your lymphocytes are reacting to certain antigens, ie my antibodies showed that my EBV is not active, but th LTT revealed sky rocket high titers, which means that my lymphocytes are actively fighting the virus. If it was latent, the activity level would be rather low, but mine showed clearly an active fight by my immune system with the EBV virus. Here, they are treating high titers, irrespective of whether it is regarded "latent" or "active", as a high titer means that your immune system is hving a horrible time dealing with the virus and not having capacity for other fights (bacteria, parasites).

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Hi Bianca, the LTT you mention sounds like the lymphocyte sub set test my doc uses too. Lymphocytes are a generalised immune response to viral infections, certain lymphocytes like cd8 are common in herpes viruses.

I have also read that herpes viruses are always doing their dirty work ie trying to make us sick, so even when supposedly dormant they are actively doing something but not replicating, its when they replicate they increase the amount of virus in us and antivirals stop this replication but not stop them from trying to cause havoc in our nervous system. I suppose a very low viral load just isnt strong enough to make an impact on us(non cfs/healthy people). Long term av's are used in the hope that they burn themselves out, sort of like dieing of old age. I hope they die of old age before i do??

my NYC doctor told me that a very old patient of his had no elevated titres at all..i think everything was lower than normal..so he thought that was weird, that perhaps she wasn't producing antibodies..she ended up responding to acyclovir and going back to graduate school f/t and published papers and stuff. she had had CFS for 15 years i think.

my NYC doctor told me that a very old patient of his had no elevated titres at all..i think everything was lower than normal..so he thought that was weird, that perhaps she wasn't producing antibodies..she ended up responding to acyclovir and going back to graduate school f/t and published papers and stuff. she had had CFS for 15 years i think.

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Hi Daff, originally i had IgG antibodies to ebv and now i dont produce any antibodies for some reason, this loss of antibodies to ebv is also written in Oslers web, so maybe a common occurrence.

Both EBV and HHV-6 virus are composed from different viral-proteins (different "parts" of the virus). One IgG test measures against one viral protein (it measures only the presence of the specific IgG antigen against a certain "part"). Measuring against only one protein-IgG is usually useless to judge if there is active infection (For EBV you need to test at least EEA-IgG and VCA-IgG, maybe even EBNA-IgG).

Furthermore, Montoya tests for HHV-6 not only by IgG, but by PCR as well. He considers it a positive with a HHV-6 copy-count of bigger than 10^5 to 10^6 (100.000 to 1.000.000).

I know that Montoya (and other doctors) report success in some with Herpes-Antivirals. And I know one blog vlgonvalcyte.wordpress.com from one mother about her and I think her daughter, who have success with this.

But from what I read about the larger Montoya study, it does work only in a small subset of people with CFS. If you have access to it and it works for you: good! Continue it! And share your experience! Since when do you take it? What does it do for you?

Personally, if I had access to Ampligen, that would be the first thing I would try.

I'm currently tying Equilibrant myself, but I fear it doesn't work for my CFS (but it clears up my sinusitis and got me rid of my hay-fever!).

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Is Eqillbrant a prescription med? I have terrible hay fever - another misery to add to the fibro. I've never heard of it, but would like to try it. I have to take antihistamines constantly.

I think that Valcyte is one of the few (maybe the only) one that crosses the BBB at all, but that's just my memory and could be wrong. Seems that it doesn't do it in large amounts, either, so you need fairly high doses to get enough into the CNS. Don't take my word for it, though.

In my particular case, I saw the most cognitive improvement when I was taking my whole daily dose at one time "for better tissue perfusion". Daughter had a similar result. We didn't do that until we'd been on daily divided dose for a year or so, though.

Given how many people have trouble with Valcyte, much less high one-time doses, I wouldn't want to try one time daily dosing right away. This is a med that really needs a knowledgeable doc managing it for each individual's unique situation.

I don't speak for Dr L, so I don't know exactly what his take on it is.

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I am following Famvir protocol for fibro, but my fibro doc told me Valcyte better. Bought it and ended up paying $500 for it. I have been totally unfamiliar with antiviral use in this disorder, as my doc never prescribed it for me, even though have EBV & Parvo.

Can you please tell me what you meant by "one high dose of Valcyte to get into CNS"? How many mgs. of Valcyte is that?

I am following Famvir protocol for fibro, but my fibro doc told me Valcyte better. Bought it and ended up paying $500 for it. I have been totally unfamiliar with antiviral use in this disorder, as my doc never prescribed it for me, even though have EBV & Parvo.

Can you please tell me what you meant by "one high dose of Valcyte to get into CNS"? How many mgs. of Valcyte is that?

thanks.

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I think she means taking all 900mg at once as opposed to dividing it into two doses per day - to have the most impact on the CNS and piercing the blood brain barrier.

No problem! If they do prescribe Valcyte, it's a good indicator that they know the correct tests to run (just my $.02). Any CFS doc worth their weight is not only familiar with Valcyte, but uses
it on patients who fit the right profile as so far, it's the only treatment that's been researched and proven on a subset of patients. Valcyte knowledge=good litmus test.

Case in point, my first CFS doc diagnosed me with adrenal fatigue and wanted to give me cortef and vitamin C. Didn't run any tests for HHV6, Parvo, CMV, etc. I don't think he even knows they are factors. Valcyte is completely off his radar. I switched soon after.

I am following Famvir protocol for fibro, but my fibro doc told me Valcyte better. Bought it and ended up paying $500 for it. I have been totally unfamiliar with antiviral use in this disorder, as my doc never prescribed it for me, even though have EBV & Parvo.

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I have never before heard of Valcyte being prescribed for fibro. It is a serious and potentially dangerous medication used only for active CMV or HHV6 infection. It should be used under close supervision by an experienced doctor. Frequent testing is necessary to avoid very serious side effects. It is also extremely expensive -- $4000-$6000 per month.

Are you perhaps confusing Valtrex and Valcyte? Valtrex is used for EBV, HSV, and VZV. It is safer and much, much cheaper than Valcyte. Famvir and Valtrex are in the same class of drugs and are used for the same infections

Valcyte isn't known (or expected) to be effective for Parvo. I have been told there is no established treatment for Parvo, and the typical treatment path is to eliminate other infections and support the immune system so that it can fight Parvo on it's own. In some particular cases, IVIG has been used for Parvo.

famvir/valtrex have also been shown in Dr Lerners research to be a successful treatment for cfs/me with active ebv only.
Famvir/valtrex are also used to prevent cmv/hhv6(organ transplant) as well as keep those viruses down after being treated with valcyte and other cmv antivirals? SO they do have some effect on most herpes viruses.
Famvir is also know to be effective against hep B, to what extent i dont know?

Famvir/valtrex are also used to prevent cmv/hhv6(organ transplant) as well as keep those viruses down after being treated with valcyte and other cmv antivirals? SO they do have some effect on most herpes viruses.

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What I was told by a certain ME/CFS specialist with experience with antivirals is that Valcyte is needed for active CMV/HHV6, but Valtrex can help keep them suppressed once they're not active. It had something to do with the stage of replication at which the particular antiviral works.

What I was told by a certain ME/CFS specialist with experience with antivirals is that Valcyte is needed for active CMV/HHV6, but Valtrex can help keep them suppressed once they're not active. It had something to do with the stage of replication at which the particular antiviral works.

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Its worth having a shot at trying valtrex and famvir for cmv/hhv6 as a large majority of people on these types of forums wont ever get the chance to try valcyte unless things change drastically with cfs/me, either just dont have the money or the health system doesnt cover it. Its a shame. Even valtrex and famvir are expensive for many of us, i know it makes a big hole in my budget.

if they can stop the virus replicating at a certain stage then theoretically it should lower viral load. My first 12 months on famvir almost had my immune labs back to normal and symptom wise is the best i have felt since having cfs. I shouldnt have regrets but i wish i didnt stop famvir after 12 months. But the information out there on how long to treat someone, dosing etc is still not black and white.

Its worth having a shot at trying valtrex and famvir for cmv/hhv6 as a large majority of people on these types of forums wont ever get the chance to try valcyte unless things change drastically with cfs/me, either just dont have the money or the health system doesnt cover it. Its a shame. Even valtrex and famvir are expensive for many of us, i know it makes a big hole in my budget.

if they can stop the virus replicating at a certain stage then theoretically it should lower viral load. My first 12 months on famvir almost had my immune labs back to normal and symptom wise is the best i have felt since having cfs. I shouldnt have regrets but i wish i didnt stop famvir after 12 months. But the information out there on how long to treat someone, dosing etc is still not black and white.

I think its a matter of trying whats available to you.

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Absolutely. Ideally we take the best medication available for the given infection, but sometimes that's not available either for economic reasons, or because the medication is contraindicated for us for other reasons. In that case we need to go for the best we can manage.

When cfsme is recognized for what it really is than hopefully these meds will be more available.
I don't think valcyte has long until it's patent ends. So hopefully it will be cheaper but also more meds come out for these infection, which will come under a patent.

When cfsme is recognized for what it really is than hopefully these meds will be more available.
I don't think valcyte has long until it's patent ends. So hopefully it will be cheaper but also more meds come out for these infection, which will come under a patent.

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Valcyte is supposed to go off patent in 2015. As you say, that will make it much cheaper. Of course the pharmaceutical companies will then present the next, better AV which will be horribly expensive.